Voiceover: 

Welcome to The Raw Nerve, the official podcast of MS Australia, the conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments, and advocacy efforts, as well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers, and advocates. 

Jeremy Henderson: 

Welcome to the Raw Nerve. I’m your host, Jeremy Henderson. Joining us today in the studio, from Brisbane, is Carmel Charlesworth. 

Carmel is an author, a mother, and an authenticity advocate. And as someone living with MS, she’s passionate about sharing her journey with MS in order to support others. Welcome Carmel. 

Carmel Charlesworth: 

Thank you for having me. It’s lovely to be here. 

Jeremy Henderson: 

In my introduction and like all of our guests, you wear many hats. One of the roles that I’m most excited to talk to you about is your work as an authenticity advocate. But we might just put that to one side for one minute and maybe we can just begin by telling the audience who is Carmel Charlesworth? 

Carmel Charlesworth: 

Okay. So as you said, many hats. I’m a mum to two boys, nearly 15 and nearly 12. They share the same birthday, funnily enough, three years apart. And, I’m a volunteer at our local football club. So I look after the first aid coordination of our rugby league club. 

My oldest boy plays there. My husband is one of the vice presidents, so we’re very heavily involved in the club, very much a sporting family. So, I’ve always grown up with sports, playing netball and squash, more recently, Taekwondo. I was a black belt and a black band instructor for Taekwondo. 

Writing is a passion of mine. I’ve always been a writer, always been a reader, cooking. Yeah. I’m a JP  (Justice of the Peace) in the community as well, so I get to meet a lot of people and help a lot of people there. 

And, I work full time, as well. I am a school officer at a Catholic school, and I work with the cultural team and the PE department. So my role and day-to-day varies very much, but I love it. It’s busy, but it’s a lot of fun. 

Jeremy Henderson: 

So, I imagine we’ll move into this a little bit later on in the podcast. But, I can see how some of those passions and some of those interests have maybe been strengthened or refocused in a different way since your MS diagnosis, which is fairly recent. You were diagnosed with MS in 2021. I wonder if you could tell me a little bit about that. 

Carmel Charlesworth: 

Yeah. Sure. So originally, I had some mild symptoms, which I didn’t put down to anything as serious as MS. Originally, I had headaches that lasted for a long period of time, and then eventually I got that investigated. A few other symptoms were put together and eventually the diagnosis came about. 

So, yeah. Dizziness, numbness, brain fog is a big one for me. Yeah. So like a lot of people, the little things you don’t notice make the bigger picture in the end. 

Jeremy Henderson: 

Was there a period of time where some of those symptoms appeared to self-resolve and you maybe just thought they had gone? And at what point did you think, “No. There’s something not quite right here. I need to see a GP or a health professional and have a discussion about it?” 

Carmel Charlesworth: 

Mm. So as I said, the headaches were lasting weeks and weeks and I thought, “Yeah. Something’s not quite right.” So originally, I went to see my doctor about it, and we did a few tests. 

He sort of said to me, “Hmm. Possibly that you clench your jaw too tightly,” which is fair. I was working in an office job, so the neck and shoulders and jaw tend to be quite tight. So, okay. That was fine. 

And then about four weeks after that, there was two major things that happened in that period of time that led me to go back and have another conversation. 

So as I mentioned, I’m in charge of the first aid at our local football club, and I’m a sports trainer for my son’s team. So if a player gets injured, then I run out onto the field and assist them. 

So this particular week I started to get some numbness in my fingers, but it was around the same time that we were getting cooler weather. So, I didn’t really think too much of that at the time. 

But later in the week, when I was running onto the field to assist a player, I realised that I couldn’t really feel my feet. And, I thought that was a little bit weird. I mean, also a bit scary because you’re running and if you have numb feet, it’s all you can focus on. 

So unfortunately, went from me needing to focus on the player to me focusing on my running and not wanting to fall over in front of everybody to get to the player. 

That was on a Sunday morning. Sunday night I had a shower and was drying myself, and I couldn’t feel the towel on my back and my torso as I was drying myself. I thought, “Yeah. That’s really weird.” I was looking in the mirror and I could see the towel going over my back, but I couldn’t feel it. Okay. 

And then at that point, I spoke to my husband. I said, “I feel like something weird is going on.” And I said to him, “I need you to pinch me.” He looked at me like I was crazy because who’s going to ask their husband to take that willingly? And I said, “No. Really, I need you to pinch me on my torso.” And he said, “Okay.” 

So, he pinched me on my torso. I said, “Are you doing it?” And he said, “Yes. I am.” And he sort of looked at me with this perplexed look. And I said, “Can you pinch me on my arm, that same level of intensity so I can see how hard you were pinching me?” And, it was quite hard. 

And I said, “Do that on my torso again.” And he did it, and I couldn’t feel it. I said, “Okay. I need to go back to the doctor and have a conversation about this.” 

So from there, he referred me to a consulting physician, and we did some nerve tests, MRI. In that time actually, I was looking on Google, as most of us do when we’re going through something like that. And, I came up with three scenarios. I either had nerve damage, I was deficient in vitamin D, or I had MS. Those are the three things that I thought of. 

So after going back to the consulting physician with my MRI results, he actually asked me what I thought was going on. And I told him those three scenarios and he said, “I’m pretty confident you have MS due to the lesions that I’ve seen on your MRI.” 

He referred me to a neurologist at that time, and then we went from there. So, those are the two main scenarios that really led me to seek medical advice. 

Jeremy Henderson: 

So in that period of uncertainty, when you had the symptoms and the concern that something was wrong, and then following the diagnosis, what were the impacts on you? 

The focus on World MS Day this year, and next in fact, is MS diagnosis. And one of the things we’ve looked at this year, and reported on, is examining people’s MS journeys and really drawing out the actual significant impact that it can have both on your relationships, your mental health, your employment, both in that period of uncertainty where you know something’s wrong but not sure what it is. 

And then obviously, there is some relief, I imagine, in getting that diagnosis and actually being able to put a name and a label on a condition. But then, also the great fear and uncertainty of what that is now going to look like. So, what was that like? 

Carmel Charlesworth: 

So, it was 2021 when I did get my diagnosis. So, we were just coming out of the COVID era. So, I was actually looking to move on from my employment at that time. I’d been with the company for 16 years, so it wasn’t something that I’d taken lightly. But, I wanted to find a role that brought me joy in something that I enjoy doing day to day. 

So when I was going through this diagnosis, I had that in the back of my mind. I was actively looking at a new role. But then when I got my diagnosis, that sort of put me back a couple of months. 

I didn’t really know if I should be looking for another job. I didn’t know if I would need extra time off or medical days or what it would look like in the near future. 

So for a short period of time, I sort of just put that out of my mind and thought, “Okay. Well, I need to stick with security instead of what I really want to do.” 

And after speaking to the neurologist and looking at options and treatments and seeing where I could go from here, I decided that, “No. I think I actually really wanted to follow my joy and find my passion and whatever’s going to happen is going to happen.” 

People who don’t have MS have sick days, other things happen and they need to take time off. So, I made the decision to chase the passion, chase my dream, and find the joy regardless of what that might be, so. 

I’m also fortunate that my husband has been with his company for 30 years next month. So, yeah. He has secure employment. I’m as flexible in taking time off to help with the boys or if I need help with treatment or anything like that. So, I’m fortunate at that point in time that I was able to do that. 

Jeremy Henderson: 

So in terms of navigating your MS, what does it look like? When we first started talking, you talked about your sporting interests, and you’re obviously very, very active and a keen sports person. What kind of impact has that had on you and your ability to sort of participate and enjoy those sports that you’re so passionate about? 

Carmel Charlesworth: 

I was diagnosed when I had become a Taekwondo instructor. So, at the time I thought, “Let’s just see how this goes,” because I didn’t want to give it up there and then and just say, “Well, I can’t do it anymore.” That’s not who I am. That’s not my attitude. So, I thought, “Let’s just see what my body does, can do and struggles with. Let’s give it some time.” 

So, it was about six months, and I’d spoken to my Taekwondo instructor at the time. He knew what was going on. I said, “I don’t know how long I’ll be doing this for, but I just want to give it a go and see how it goes.” 

So, I was able to do it for a period of time, but I decided that due to my brain fog, and I’m sure many MS sufferers can relate to this, you know what you want to say, but you can’t necessarily get it out. 

So, when I’m teaching patterns and different techniques for Taekwondo, I couldn’t remember the name of it, couldn’t remember the next step at times. And, that was really frustrating. I didn’t want to not be able to give my best to it. So eventually, I did phase it out of my life. I still occasionally will practice, but as far as a teaching space, I removed myself from it. 

As far as other activities, we are a very sporty family, and we have a dog, so do a bit of walking. My job keeps me active, as well. Running onto the football field, hopefully not too often because it usually means that somebody’s hurt. But, yeah. Always around a sporting ground, doing something to do with sport. 

And being a sports officer with the PE team, I’m always going to sporting events and doing first aid for sports carnivals or competitions, everything like that. So I’m still around the sports, but I’m just not as competitive physically. Mentally might be another story, but physically I’m not putting myself into as many sports just for self-preservation, just to make sure that I’m not pushing myself too far. I still am quite active, and I do move around quite a bit. So, yeah. 

Jeremy Henderson: 

So many of the impacts of MS can be invisible in terms of those symptoms and in terms of the impact it’s having (on) you. Today you’re on camera and you look great. There may be days when you’re having really, really bad days and MS can be brutal and that may not be apparent to others. Is that a real challenge? 

Carmel Charlesworth: 

Oh, it definitely is. Even when you’ve spoken to people about having MS, they will look at you and say, “I couldn’t tell.” I’m fortunate that at this point I don’t have a lot of physical symptoms. 

As you said, it can be quite invisible. I don’t need assistance walking or anything like that at this point. So, people will often comment that they’re in disbelief that I actually have the condition. 

And sometimes they forget, also, because you don’t have that physical reminder. I still have quite good strength in my arms and legs. So, if I’m picking up something heavy, people will give a second thought or glance at you or think, “Ah. No. I should actually be helping you with that because you have MS,” which is lovely. 

And, there are times when you do need to ask for help with that kind of thing. But generally, people are amazing. I was actually quite overwhelmed with the support and people reaching out once they found out that I had MS. 

And particularly at work and the football club, people are always saying, “If you need something, let us know if we can help. If you’re not feeling well, we’ll cover.” So, I’m very fortunate that I have a great support network around me. 

Jeremy Henderson: 

So in turn, you’ve been really, really passionate about wanting to support others going through the journey that you yourself have gone through. Why is that so important to you, and what was sort of the impetus, I guess, for that? 

Carmel Charlesworth: 

I think because everybody’s journey is different and no two people go through the same thing. Especially when you are initially diagnosed, to know somebody else has gone through it, albeit not exactly the same, they’re going through it. You can actually speak to people and give some sort of comfort or advice if they ask for it. Just to know that somebody else will understand what you’re talking about, what I mentioned before, brain fog. MS sufferers will know exactly what I’m talking about when I say brain fog. Just little things that, unless you’re going through it, you don’t understand what it’s like. Just being there for other people is a huge help. 

One of my good friends from high school was diagnosed quite early on. And the day that I found out that I had MS, I didn’t reach out to many people at that point. But I sent her a message to let her know, and she was fantastic. 

She was able to answer the questions that doctors can’t answer, only somebody who’s going through MS, had MS, can answer for you. So, she was instrumental in being that support person for me. So in turn, I’d like to be that support person if anybody would like it. 

Jeremy Henderson: 

And so, one of the ways you’ve done that, and actually reached a much larger audience and many people, is through your writing. I wonder if you could tell us about that and maybe starting with the first publication, Extraordinary. 

Carmel Charlesworth: 

So, Extraordinary is a multi-author-built book. Originally, the call went out from Georgie Hansen, who is a good friend of mine and who is publisher extraordinaire from Mosaic Media. Originally, it was for parents who had children with medical conditions or disabilities. And over time, that actually evolved to include people or adults who had conditions, medical diagnosis, the carers, medical professionals, anyone who was dealing with conditions or medical conditions, diagnosis in that space. 

So I put my hand up and I said, “Well, actually that does cover me. I have MS.” And, she actually didn’t know. I didn’t actually tell a lot of people in my life, only very close friends and immediate family. So there was a lot of people in my life who I was friends with, but I didn’t tell. 

And so, she was quite surprised when I did share that information with her. And she said, “Love for you to be in the book.” So, I wrote my chapter, and Extraordinary was a huge success. We became international bestsellers on Amazon. 

And, what we had envisioned is having this book, survival stories and experience stories for people to pick up wherever they work, could be a hospital, Ronald McDonald House, an MS clinic, and see their story or a version of their story in that book. 

So the sales from the first 30 days of Extraordinary went to purchasing more hard copies of the books so each of the authors could actually choose a charity, or their special place, to be able to donate copies for others to read. 

It was a heart project. It was beautiful. And the feedback that not just myself but the other authors have had from Extraordinary and those who have been touched by what they’ve read and can relate, is amazing. And, it’s done exactly what we envisioned it would do. 

Jeremy Henderson: 

The chapter in that book covers off on a number of the things we’ve spoken about, your MS diagnosis, your passion for advocacy, impacts of MS on employment and on your family life. What kind of reception did you get to the chapter you wrote? Did it widen your network? Have you met people as a result of reaching out to people through that book? 

Carmel Charlesworth: 

Definitely. I’ve had people that I don’t know reach out to me through my author page on social media. An article was published through BCE, which is the Brisbane Catholic Education, which is the company that I work for. And people that I didn’t know were just reaching out to me and saying, “I can relate to what you’re going through. Thank you for sharing your story.” Parents, their children have MS, have reached out to me. Not just that, people who I’ve known in my life, but not necessarily quite close to, have reached out and said, “I didn’t know. Thank you for sharing your story. My cousin, my friend, my sister, my mum, has MS.” 

And so, it’s really become a talking point and is bringing awareness to people who might not necessarily know what MS is. So, it’s kind of a dual thing. People who don’t really know that much about it are getting an insight into it through mainstream and through something they can just pick up or have a conversation about. And people who have been affected by MS can relate and actually have something tangible to take to their family or take to their friends or have a difficult conversation. And said, “Can you read this chapter? This is something similar to what I’ve gone through.” So, it’s really powerful in having the tool like that for others to use in their own lives. 

Jeremy Henderson: 

It’s clear, Carmel, you’ve got a really, really positive mindset and obviously that’s really, really important to you. How challenging is it to remain positive in the face of MS? 

Carmel Charlesworth: 

I think it’s important to acknowledge that everybody goes through hard times, regardless if it’s MS, or… Everybody goes through that. So, you’re not going to be positive 100% of the time. That’s just life, but the key is finding the magic in what you’ve gone through. And I know that can be very difficult, but it’s taught us something. 

It’s made us look at our lives differently. It’s changed our perspective. It’s given us gratitude for our lives. And for me, personally, it’s given me another level to be able to connect with other people and help other people on their journeys. 

You have to own it. Whatever it is, whatever experience you’ve gone through, going through, going to go through, it’s going to happen. So, you just need to accept it and find the positivity as best you can. 

Jeremy Henderson: 

I think what you’re saying there is echoed in Extraordinary. You say in Extraordinary, “I’m so blessed I was diagnosed early.” And obviously, early diagnosis is critical with a progressive condition. But, I guess that ability to see the silver lining or to see the good in that situation is key. 

Carmel Charlesworth: 

Definitely. Early diagnosis is so important. It really is. And, I am fortunate that my GP and my medical team took what I was saying seriously and put that into action so I could confirm diagnosis and treatment very early on. 

Jeremy Henderson: 

I’m really, really curious to speak to you about this. So, you are an authenticity advocate. So, I would love for you to tell the audience what does that entail? What is an authenticity advocate? 

Carmel Charlesworth: 

I think I touched on it before. It’s just owning what you’re going through, being the best version of yourself. Or even at times when we’re not so positive, just owning it, just being accountable and being authentic. So, living your best life, standing in your truth. 

There’s so much pressure on people to be an expectation, look a certain way, act a certain way. But if you just embrace who you are, then you get so much more out of life, and you find the people who embrace you as well. You don’t have to hide. You don’t have to think, “Oh, they’re not going to like me.” Or, “I don’t fit in.” Or, “I’m not good enough.” You absolutely are. You just need to own it, be your true self. I’m very passionate about that. 

Jeremy Henderson: 

I love what you’re saying. How do you support people to be their authentic selves? It’s obviously more challenging for some than others and also something very easy to say. How do you give people the strength and a support and empower them to be their authentic selves? 

Carmel Charlesworth: 

I think first and foremost is just listening to what they’re saying. Quite often if you listen long enough, they actually come up with the answers themselves with how they need to move forward. So, you’re right. It isn’t easy. Everybody has a lot of stuff, a lot of stuff that they need to deal with from life throwing us all these curveballs and the expectations of others and the expectations that we put on ourselves. 

So for me, it’s mainly just listening and helping people unpackage what they need to learn from and what they need to work on. Because everybody needs to work on stuff, me included. Day to day, it’s always something that I’m learning. And that’s the other thing, is just learning and adapting because we’re not the same person that we were a year ago, a day ago, but we’re constantly evolving. 

So, yeah. Just listening to other people and being empathetic to whatever they’re going through is often the key to starting to heal. Because essentially, being your true self and authentic self is about healing what’s happened in your past, whatever that may be, and focusing on the future and how you can bring the best out of your life and who you are as a person. 

I think also for me, personally, it’s being of service to others. I find the most joy helping other people. So if that is listening, if that’s buying them a coffee because they’ve been up all night with they’re teething one-year-old, or whatever the case may be, it’s just being there for other people. That really helps shine a light on who you can be, the best version of yourself. 

Jeremy Henderson: 

You spoke about the support you’ve received from others and including the great support you’ve received from your husband. You’ve got two young boys. What do they know and understand about your MS? How does your MS impact, if at all, your family life and raising those two boys? 

Carmel Charlesworth: 

Mm-hmm. So at the time when I was diagnosed, they were 12 and nine. So, I gave it a bit of thought. And, I didn’t want to try and bombard them with all the stuff that could happen, might happen, the doom and gloom of it. So, I wanted to give them some information that was tangible for them and what they would understand at that age. 

So I would say things to them like, “You need to help mum open this jar,” because the numbness in my fingers made it a little bit difficult. “Would you be able to help me with that?” Balancing things. “I might need to go to bed a bit earlier because I’m tired.” Or if we go for a family walk, “I might need to walk a little bit slower than you boys.” 

And just little things that they would understand and notice, not necessarily freak them out because I didn’t want to do that, either. 

I didn’t want to have that doom and gloom of, “This is going to happen to mum.” They were just too young to understand everything. And even now that they’re nearly 15 and 12, they do recognise when I’m not having a great day. 

They can sort of see it in my face. Even my youngest one will look at me and say, “Are you not feeling well today, mum?” “Well, not really.” “Can I make something for you?” 

They’re good boys, and they’re very sweet. They haven’t really, I don’t think, understood completely, and they may not understand until they’re older, exactly what MS is and how it works and what it can potentially do. 

But for now, I’m well. And the little things that happen, if I’m not having a great day, they’re there as a great support. So as far as our family life is concerned, it hasn’t really affected us too much in that respect. 

Yeah. Just getting me cups of tea if I’m not feeling well and having early nights. It’s not that bad, and they could do well with learning those things for the future. It’s fine. 

Jeremy Henderson: 

Now, Carmel, you’ve another writing project on the go at the moment, another co-authored book called Emergence. I wonder if you could tell me a little bit about that. 

Carmel Charlesworth: 

Yeah. Sure. So again, when Georgie put the call out, she was looking for leaders who were willing to share their stories of finding contrast in life’s experiences, things that had come up in their lives, and they’d gone through something. They’ve come out the other side. Life gives you lemons, you make lemonade, that sort of thing. 

So, I sat on the sideline for that for a little bit because I was looking at the calibre of women who are actually signing up for this book, in America, overseas, some in Australia. And, they’re all amazing business leaders and powerhouse women. And I thought, “Well, I’m just little me.” I sort of felt a little bit out of place being in that book with them. And also I thought, “Well, I’ve explained my MS diagnosis and that part of my journey.” So, I didn’t really think that I had that much more to write about it. 

And then after giving it some thought, and even just going through it really in the last sort of six months, I thought, “No. There’s actually more to this story. It’s not just I’ve been diagnosed with MS. The end. There’s far more to it than that.” 

And so, I said, “Yes.” I put my hand up, and I joined Emergence. This new book is actually the next step, what happens after your diagnosis? Which again, I now realise is just as important as the diagnosis. It’s, “What does my life look like after the initial diagnosis? What have I had to do? What have I had to overcome to move forward?” 

So, yeah. I’m hoping that this book will have the same amount of impact on others diagnosed with MS. They can relate, and hopefully, they can find the positivity in the next step because it is quite scary at some point. 

For me, after my MS diagnosis, I was just focused on what I needed to do to stay well. That was wholly and solely my focus. So this next step is, “Okay. How am I living my life now?” 

I know how well I am, or not well. I understand my body a bit better. What’s the next step? What do I want to achieve from my life? What else can I do to find my joy and to help others? So, this is what Emergence is about. 

Jeremy Henderson: 

Excellent. That’s coming out later this year? 

Carmel Charlesworth: 

Yes. Late August, September. So, we haven’t locked down a date for publication as of yet. It’s just in the editing stage at the moment, so. 

Jeremy Henderson: 

Excellent. Over this last three years navigating this MS journey, if you had some advice for our listeners, people maybe newly diagnosed, what do you now know that you didn’t know or appreciate or fully understand three years ago in 2021 when you were diagnosed and would pass on to others you think might be valuable in terms of a learning? 

Carmel Charlesworth: 

So, I think being your own MS advocate is something that I would put out there and strongly encourage others to do. So what that means is, again, coming back to the authenticity advocate, putting your hand up and saying, “Something isn’t quite right.” 

And, my journey started with headaches, which is so commonplace. Started with headaches, but then as the little things started to add up, I thought, “Something’s not quite right.” So, it’s better to listen to your body and get it investigated. 

It might not be anything, and that’s fantastic. But if it is something, you need to look into it and get it investigated and get treated. If it ends up being MS or another condition, early intervention is key. And I think once you have an MS diagnosis, asking for help, being an advocate for yourself. If you need help at work or at home or somebody to talk to, you know you and only you know yourself, so you need to advocate for yourself because nobody can do it for you. People can help, but you need to be that catalyst in reaching out and asking for it. 

I think being your own advocate is hugely important. Also, that there are services specifically for those diagnosed with MS and their carers. You can reach out. 

You can speak to MS nurses. There’s lots of information out there that you can seek help and advice. Definitely, if you feel you need to, reach out, because I didn’t realise there was so many people out there that can actually offer support. 

MS nurses are fantastic. Yeah. I would highly recommend having a conversation with them, even if you’re not at a stage where you might need in-home care or something like that. Just having a conversation and seeing how they can support you or where else they can direct you if you might need some mental health support, something like that. They’re a wealth of knowledge, so I would highly recommend contacting them. And, yeah. Just reach out. 

Jeremy Henderson: 

Great advice. Carmel, thank you so much for joining us on The Raw Nerve. Congratulations on the publication, Extraordinary. Best wishes for your upcoming co-authored book, Emergence. And again, thank you for sharing your journey with our listeners on The Raw Nerve today. Thank you. 

Carmel Charlesworth: 

My pleasure. Thank you so much for having me. 

Voiceover: 

Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.